Finally trying to reduce Prednisone dosage

I was diagnosed with PMR/GCA in May 2015. I started on Prednisone 40mg, but went up to 60mg when I had a GCA flare. It's been a rocky road since May. I just started on Acterma IV infusion 2 weeks ago. There are some exciting clinical trials going on with this medication being used for GCA. Acterma has been available for juveniles and adults with rheumatoid arthritis. The trials are showing some pretty significant remission with GCA.

Today, I decreased my dosage from 40-35mg of Prednisone. I so hope to be able to slowly decrease the Prednisone while taking the Acterma. I've never been able to get below 40mg of Prednisone without GCA flares.

I was in a car accident January 2, and have a whiplash as a result of the accident.

I've experienced an increase in frontal/temporal headaches, and upper back,

Left shoulder and neck pain. It has been difficult to sort out what is causing the symptoms, as these are areas where I experience a lot of pain.

I started some physical therapy yesterday for the whiplash. Very gentle stretches and posture exercises.

I have learned so much from this forum, and all of your experiences. I can't thank you enough for your commitment to this group of people. We live and learn so much from one another.

7 Replies

  • "The trials are showing some pretty significant remission with GCA."

    I do hope so - although the only indication at present is results in a couple of dozen patients in a pilot study and some of the patients relapsed after stopping it - so it did not appear to be curative. The GiACTA study on 250 patients is still on-going and has not yet reported its results although it is possible there are now some patients in the second stage where they do know they are on tocilizumab.

  • Thanks for your comments. My son-in-law works for Roche/Gennentech in marketing and sales. He just returned from a conference. Some of the participants at the conference indicated to him that Acterma will probably be FDA approved within the next year for GCA. Hopefully, this will be an additional medication at help GCA. Time will tell.

  • Ah yes - I knew someone had a relative who worked in the field. Insider knowledge is useful! I used to get to see results of trials in the middle as they proceeded to the next stage but now I have to wait with the rest and am really looking forward to it.

    I imagine it will be quite popular for GCA but I doubt somehow that it will get to be used for PMR, especially in the UK. I wonder if it will have to be used like pred on a relatively continuous pattern or if it does achieve more.

  • I haven't heard about anything about using the Acterma for PMR. It will certainly be wonderful if/when they ever develop another medication for PMR. I will try to keep you updated if I learn anything more about the Acterma and GCA and FDA approval. I don't know how long I will be on the IV Acterma. Hopefully, I will be able to tolerate it. I only take it once a month. I still have lots to learn. I feel fortunate that my rheumatologist is willing to try this medication with me.

  • It was intended/hoped to do a follow-up study in PMR if it worked in GCA since it is thought that they are pretty much the same sort of vasculitis but it has been shelved. However - even if it works, I can't see any healthcare funder approving it for PMR when they know it is possible to manage it well with cheap as chips pred. If a couple of infusions resulted in a "cure" maybe as it would avoid the long term downsides of pred but not otherwise.

  • Hi Joyful13,

    Very good news!

    NY doctor has spoken of this treatment as well. Having read some of the studies, it sounds promising --- it reduces the inflammation at the cellular level --- killer t- cells, I l 6 and others.

    I have held off trying it, because of the lowered immunity effect.

    Glad you got some positive results!

  • Whittlesey,

    Thanks for your encouragement,

    Yes, I read the results of one of the studies.

    I am on Medicare through Kaiser Permanente. I haven't

    seen a copay or bill for the first infusion as yet. This is an area that I will discuss with my rheumatologist or at the next infusion.

    I so hope that Acterma will at some point be available to anyone who has GCA where the Prednisone is not enough. We can only hope and pray for better treatment for PMR and GCA.

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